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FARA
Cure FA
FARA Ambassador ProgramThe Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.
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Name: Giovanna Moreschi.
Age: I am 20 years old.
Where do you call home? São Paulo – SP – Brazil
What are your educational goals? I study courses in psychology. Even though I have FA and many difficulties, I do not give up and do not stop believing that I will build my career!
Who do you live with? I live with my parents and my two sisters.
Name: Kay Krankel
Age: 83
Where do you call home? Currently, my home is a skilled nursing facility in Scranton, PA.
Education: I made it through one year of college when I got the job I wanted.
Who do you live with? I have been married for 60 yrs. We have five children and sixteen grandchildren.
What's a typical day for you? Currently, a typical day for me includes lots of reading, playing bingo, and occupational therapy. Every other week, facility-sponsored entertainers visit.
Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. October's hangout will be led by FARA Ambassador Andrea Garcia.
The theme will be: Back to school part 2. How is the school year going? How do you talk to friends and school staff about your ataxia? What are your strategies for studying or socializing? We will be joined by 2 people with Friedreich's ataxia currently in college/grad school. Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!
Name: Jordan Michael Patrick Murphy
Age: 25
Where do you call home? Chuluota, FL
Education: High School Diploma, some college
What's a typical day for you? A typical day for me includes various appointments, personal care activities, and, truthfully, at this point, much daydreaming.
How long have you known you are living with FA? I was diagnosed at age twelve but was symptomatic at a much younger age. It took a long time to diagnose. We were lead to believe my flat feet were to blame for my un-coordination. I've known for thirteen years.
Name: Megan Leeper
Age: 21
Where do you call home? Burleson, Texas. The DFW area.
What is a current goal you have with your education? I am working on getting a Bachelor's degree in psychology with a focus in forensics.
What is your relationship status? I currently live with my parents and two dogs.
What's a typical day for you? A typical day for me is pretty laid back since my schooling is now online. Physical Therapy is twice a week, and because I struggle with fatigue, I am mostly a homebody.
How long have you known you are living with FA? I found out I had FA after a nerve biopsy. Every doctor struggled with figuring out what was wrong. My genetics were examined to confirm FA.
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